Storm Part 4 (for partners of people with cancer)

[Willowkins]

New thread as the old one filled up. Part 3 can be found at https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3?page=1

@Hisredipad glad to hear things have improved, I am just hoping to make it through till after the funeral and then I think I am going to need a lot of downtime.

You may be right @Evenstar. MrW was ill for 3 years and it took me at least that to start to feel normal again. After his funeral, I booked a last minute holiday for me and the kids. Looking back, I wasn't doing so well but it did help to get away.

My DH has been gone 5 years and only now am I starting to think about me.

I tried to do one thing each day paperwork wise otherwise I was overwhelmed. We have a dog which helped as it made me leave the house ((hugs))

sometimes you forget, I was at a country and western festival at the weekend and I really missed DH and wanted to tell him about it (we tried line dancing once - think we lasted about 40 mins - we was howling with laughter - the ‘professionals’ not so )

Oh @Evenstar I am so sorry to see your update. I am glad that he passed at home with you there, as you both wanted.

Please may I join this quiet supportive corner of MN?

My bloke was diagnosed with liver cancer last July. He’s had two ablations to deal with three tumours and is now on the transplant list. I’m currently like a swan - dealing with it all calmly on the surface and terrified inside. My greatest fear is kissing him as he’s taken to theatre for his 8-12 hour surgery and never seeing him again.

I have had a bad couple of days, a really special jacket that I bought DH for Christmas several years ago went missing and I knew most likely one of my stepsons had borrowed it as they were here at the end without many clothes as they rushed here. One of them has got it and is going to bring it back, but in the meantime I have turned the house upside down and flared up my fibromyalgia and there have been lots of tears.

I have got a slow puncture and can’t use my car till it is fixed and there have been numerous delays and now I am worried I won’t be able to fetch something for the funeral from the printers on Friday.

I also had a dream that DH was in a hospital hundreds of miles away and I had to go and fetch him home. I think that was probably triggered by seeing him at the chapel of rest on Sunday. My DD has been unwell and can’t come and my DS’s are working and I don’t think I will have anyone with me now till Sunday other than friends dropping in.

@Evenstar yes, that almost madness of looking for something that in fact has been moved - and doubting your own sanity?

My sister took the clothes that I had picked out for DH to wear at the funeral home - and took them home with her to iron - but didn't tell me.

There were a LOT of tears by me. And I have no idea what was wrong with my iron - she easily have ironed them here. I had no intention of ironing them - he wouldn't have bothered while alive

For the printers, could you get someone to give you a lift? Perhaps one of the people who say 'Let me know if you need anything?'

A friend has actually offered today @Jaffapaffa so I can manage that. I think the fact I am alone a lot is making me get anxious about things in a disproportionate way. Equally after DH died and months of visitors and carers I really needed some space.

It’s a horrible time @Evenstar. The limbo before the funeral is incredibly stressful and it’s so unfair that so many bureaucratic demands are made on you when you least have the capacity to deal with them.

Thankfully I think the immediate stuff and what’s needed for the funeral are largely dealt with, I remember having a bit of a crash after the funeral last time as it felt I didn’t have to keep going. I couldn’t indulge it for long though as it was during the 2008 bank crisis and I was worried that the money I was gathering to pay off the mortgage wasn’t safe in the bank.

Welcome @BIossomtoes but sorry for the reason you're here. I like to think that, as well as being quietly supportive, loud ranting is also welcome.
It's been a while but you reminded me of waiting during MrW's '8-hour' operation which became 10 hours and then I stopped counting. Sometimes I think having low expectations would have been easier to handle. It also reminded me that, because it was such a complicated operation, the surgeon asked if they could record it - so somewhere in the NHS there's a video of my DH's insides. Sometimes a dark sense of humour really helps.
@Evenstar I'm sorry but they don't get it. They don't understand about spending all your energy on trying to make it right while there's a volcano of grief you're trying to keep a lid on, and that their uncontrolled 'help' can seem more like interference.
Sending you a handhold while you get through this.

Stepson ordered 4 photo books for the wake and for family afterwards and has put Dad on the cover of all them with no thought that he was my husband and one of the others is for my brother in law. I suppose there’s no point saying anything really 😔

He’s champing at the bit to look at wills etc, his poor father hasn’t even been buried.

Gosh, that is so insensitive. Hope you are okay xx

It brings out the best in people (hugs) x

Thank you so much for the welcome @Willowkins. It’s going to help being able to talk to people who have been through it. What did you do during the op? The thought of wandering the hospital for hours fills me with dread.

So sorry @Evenstar, sometimes people just don’t think. If I were you I’d make up a personal photo book that’s just for you. That’s not for now though. It must be hard to keep it civil when conversation turns to wills so soon.

@blossomtoeswhen my DH had surgery, I left the hospital and got the bus to the town centre and wandered aimlessly round for hours. My friends whose child needed a 12 hour op went to the pictures - I wouldn’t have been able to as I was checking my phone every few mins 🤣

@BIossomtoes I think making my own special photobook is something I will do when I am ready. I actually said that to a friend earlier and she said it would be really nice and I could add some little notes of memories, just for me

Thank you @notapizzaeater. I did think of doing the same thing. I’d have to go without my credit cards - God knows what I’d end up buying!

@Blossomtoes I took a book, went to the canteen for lunch, sat in the chapel, definitely paced the corridors - all just to break up the time. I worried. I went home a couple of times (fortunately the hospital was just a 10 minute drive away).
I said goodbye just before he went for surgery at 8am and followed him to the ICU at 10pm. It was a very long day.

Welcome @blossomtoes

To the club we don't want to be in! I hope that transplant happens soon.

My DH is about to have cycle 3 of chemotherapy on Tuesday, then we expect a PET scan two weeks later. That's the moment of truth- whether the chemotherapy is making a difference to the cancer progression, or not. Given that they cannot identify the primary, if this doesn't work, we can only wait for the inevitable. Even with treatment, the median prognosis is 4-15 months and we're 3 months in already.

Just in case anyone finds it helpful I have bought myself a weighted cuddly toy that you can position to give you a hug. It’s surprisingly comforting.

Aww love that Evenstar, I’ve real life cuddlies - we’ve 2 cats and a huge dog.

I am down to 1 cat at the moment and 1 dog. My big soppy cat has been missing since the middle of April and one of my dogs had to go into foster care while my husband was ill as he wasn’t coping with all the visitors and wouldn’t stop barking. I also gave up my chickens and sent a cat to live with my daughter before Christmas so it feels very quiet compared to how it used to be. My other dog is coming back next weekend so it will be a bit livelier round the place, I thought it fairer to leave him there till after the funeral when things have calmed down.

The funeral is tomorrow, but I am not wanting to go to bed even though I am tired.

Tough day tomorrow @Evenstar. My thoughts will be with you. 🫂

Thinking of you @Evenstar and hope all goes well.